Fibro Files

Pages

Saturday

In 2010, the American College of Rheumatology endorsed a new set of criteria for diagnosing fibromyalgia. Here is an excerpt from it:A patient satisfies diagnostic criteria for fibromyalgia if the following 3 conditions are met:1. Widespread pain index (WPI) > 7 and symptom severity > 5 or WPI 3-6 and SS scale score > 92. Symptoms have been present at a similar level for at least 3 months.3. The patient does not have a disorder that would otherwise explain the pain.

ASCERTAINMENT 1. WPI: note the number areas in which the patient has had pain over the last week. In how many areas has the patient had pain? Score will be between 0 and 19. Shoulder girdle, left Shoulder girdle, right Upper arm, left Upper arm, right Lower arm, left Lower arm, right Hip (buttock, trochanter), left Hip (buttock, trochanter), right Upper leg, left Upper leg, right Lower leg, left Lower leg, right Jaw, left Jaw, right Chest Abdomen Upper back Lower back Neck 2. SS scale score: Fatigue Waking unrefreshed Cognitive symptoms For the each of the 3 symptoms above, indicate the level of severity over the past week using the following scale: 0 = no problem 1 = slight or mild problems, generally mild or intermittent 2 = moderate, considerable problems, often present and/or at a moderate level 3 = severe: pervasive, continuous, life-disturbing problems Considering somatic symptoms in general, indicate whether the patient has:* 0 = no symptoms 1 = few symptoms 2 = a moderate number of symptoms 3 = a great deal of symptoms The SS scale score is the sum of the severity of the 3 symptoms (fatigue, waking unrefreshed, cognitive symptoms) plus the extent (severity) of somatic symptoms in general. The final score is between 0 and 12.

Monday

A spoonie is a term used in the chronic illness community and means someone living with a chronic illness. The word started being used after Christine Miserandino wroteThe Spoon Theory. In her story she uses spoons as an anaolgy for energy - the amount of energy she has available in one day - and people related so well to her theory that they started calling themselves "spoonies".

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew.

When your a "spoonie" you feel that everything you do costs you a spoon. Usually it's a physical activity like cleaning the house or other examples in the image below and also it can be an emotional activity like dealing with a stressful situation at work or at home.

You’ll find this nickname, along with others, used by many people in social media such as twitter and facebook. It is not just used for people with Fibro but for anyone with a chronic illness. Christine Miserandino herself has Lupus, an autoimmune condition, causing amongst other things pain and fatigue. It is these symptoms that many people with different chronic illnesses have in common. The word spoonie provides a connection and an understanding that anyone with chronic illness has about their capabilities and their energy levels.

Other names, besides spoonies, that are used to describe people who have fibromyalgia are fibro warriors, fibro fighters, fibromites, fibro thrivers, fibro survivors. We use these names to give us a sense of community with others who understand what we are going through. They are positive descriptive words that connect us with our fibro tribe.

I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. ChristineMiserandino

Sunday

Multiple Chemical Sensitivity (MCS) is an overlapping condition that frequently goes hand in hand with Fibromyalgia.

And isn't is annoying! Out go all the perfumes - you can no longer wear - out go all the beautiful smelling candles and face products and hair shampoos. You can no longer use these without getting a headache, watery eyes and wheezing.

The weekly pumping of gasoline causes dizziness, inability to concentrate and nausea.

Heaven forbid walking into a nail salon or a freshly painted room.

Yes, that's right the treatment for MCS is to try and remove all the triggers from your life. That's why going into the world is like a lucky dip - will I encounter someone with strong perfume or after shave in the elevator? Will I have to walk through the perfume department of the store to get to the manchester that I need?

And can anyone please tell me why buying cleaning products, like shampoos and conditioners, with perfumes removed, cost MORE money

No one seems to know whether Fibromyalgia leads to MCS or vice a versa or whether they have related causes.

MCS is a syndrome where the sufferer has multiple symptoms when exposed to small amounts of everyday chemicals.

Thursday

When I was first diagnosed I was relieved to have that diagnosis and then I was pleased that I had the name and could now fight against it and get rid of it. After all hadn't I been taught that I could achieve anything I put my mind to or put effort into? Also haven't we all heard of the amazing recoveries made by people with debilitating illnesses? But unfortunately that was not the reality with this illness.

I was a healthy person all my life. I had always eaten a healthy diet so it made some sense to me that trying this diet or cutting out sugar or losing weight or whatever was touted as the latest culprit would help me get rid of what ailed me. This went on for years. It was a long and drawn out bargaining with myself... If I tried this I would get better and so I went to dietitians, hospital obesity clinics and cutting edge allergy clinics, read many health books and tried many eating plans. I had good willpower but nothing stopped the fatigue, the stiffness and the muscle pain very much. Plus I could not lose weight and feelings of worthlessness crept in.

Then there was exercise - surely this must help. But alas no, the fatigue on attempting walking or swimming or biking was too great. This was disconcerting, to say the least, as I had always been fit and had been a ballet dancer and dance teacher for many years. Then I tried pilates and also yoga which many people told me was so good for them but for me it was just a world of humiliating pain as things I could previously do, like standing up from the floor, became more and more difficult. My muscle tone did not improve and neither did I build up strength.

Self management is considered an essential part of chronic illness by doctors. This is probably difficult for most people in chronic pain or those with other ongoing conditions as we feel overwhelmed especially early on. I think it took quite a while - years even - for me to accept that this chronic illness was here to stay and that this doctor or that new medication was not going to take it away. It was only when I accepted that this was my new reality that I could begin to improve small things in my life and look after myself.

This set off a new bout of depression and grieving for the life I use to have and all the things I could no longer do like going out dancing, or going for long bush walks. Also you become mentally tired of always thinking about the disease and thinking of ways to help yourself, reading and researching. And you are just plain tired - all the time. I think there was a period of stagnating and waiting to have the mental fortitude to begin again.

(Brain fog has set in now due to all this thinking, and I will continue this saga about my expectations in a later post)

The losses and the sadness they cause never go away completely - I think they are just now accepted as part of my new normal. Having an online community of people who understand is a great comfort.

There is a lot of confusion around the diagnosis of Fibromyalgia. I personally have experienced this when I was seeking help for chronic stiffness and pain.
To keep things simple Fibromyalgia or Fibromyalgia Syndrome (FMS) is diagnosed by a doctor, nurse or other medical specialist when you have 11 or more tender points in SPECIFIC places on your body. The following is a diagram of these tender point spots. There are 18 in all and you must have soreness, on touch, in 11 or more to have a diagnosis.

﻿

Fibromyalgia is diagnosed according to criteria published by the American College of Rheumatology: widespread musculoskeletal pain and tenderness measured by the ‘tender point count’ on physical examination.

DIFFICULTY IN GETTING A DIAGNOSIS OF FIBROMYALGIA
There are many reasons why you may find it difficult to get a correct diagnosis.
Here are some I have encountered:

FMS can exist at the same time as other medical conditions and these can also be pain conditions e.g. have Polymyositis which is an autoimmune condition which causes weakness and pain in proximal muscles but I also have FMS as I have tender point pain in 11 places.

There is no specific blood test for FMS.

Many medical specialists believe that fibromyalgia is all in the head and this can range from a variety of opinions from it doesn't exist to, it is due to depression, to it is due to changes in neurochemicals in the brain.

One specialist told me that FMS is a diagnosis given to people in pain when they have not yet got a complete diagnosis.

FMS causes so many symptoms, not just pain, and the patient may not present with the pain as the other symptoms may be their immediate concern.

Saturday

Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS) have many symptoms in common. Research has found that there is a fine line between these 2 syndromes and the Arthritis Foundation says that between 50 to 70 percent of those with FMS fit the criteria for CFS.The main difference between FMS and CFS are the symptoms of pain and fatigue - FMS is thought to have more widespread pain and CFS more fatigue.When diagnosing CFS a doctor should expect a few differences.FMS diagnosed with:

11 to 18 tender points felt on the body

chronic widespread pain

sufferers often reporting having a specific traumatic event or long term stress prior to their symptoms commencing

CFS diagnosed with:

a low-grade fever, swollen glands or a sore throat

chronic fatigue which is an overwhelming feeling of exhaustion that does not go away

sufferers of CFS tracing their symptoms back to a flu or viral infection

Do the differences really matter? In my opinion, and I am not a doctor, the differences do not matter because there is no cure or magic pill for either disease only treatment of the symptoms. The treatments that are tried are very similar and include lifestyle changes such as pacing, sleep therapy and gentle exercise, pain medications and antidepressants. You can read about many of these treatment options on this site by looking through the list of articles.

This video aims to explain ME/CFS which includes Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Post Viral Fatigue Syndrome and help sufferers understand the illness and friends and family understand what their loved ones are going through. As you watch it you will see that Fibromyalgia symptoms are very similar to Chronic Fatigue Syndrome symptoms:

Tuesday

This is a round-up of all the research into fibromyalgia, that I can find, from 2016. It is very pleasing to see so much research being done on fibro and chronic pain around the world. It may take me some time to find and add all the studies so please call back if you are interested. Also if you know of any studies into Fibromyalgia not included in this list, I would love you to let me know. Thank you.

University of Colorado Boulder researchers have discovered a brain signature that identifies fibromyalgia sufferers with 93 percent accuracy, a potential breakthrough for future clinical diagnosis and treatment of the highly prevalent condition.

Friday

moderately severe pain. It works in the brain to change both the perception of pain and the response to pain.

When I started taking this medication it was explained to me that it needed to be taken at a regular time once a day and that I would probably have nausea at first for about a week and to make sure to take it with food. I did as prescribed and sure enough I had nausea for one week and then it subsided.

I used Tramadol regularly for a long time and it did relieve the pain and helped me to lose a little weight but it also helped me to lose interest in life. The main reason I lost weight was that I had no interest in food or in cooking or in looking after myself. I became like a drug addict but did not realise it. One day after about a year my daughter said she felt like she had lost her mother - she cried and said I was behind a cloud and she could not get to me. This made me realise that I was just sitting on the lounge all day doing nothing and I decided to stop taking Tramadol.

At this point I made a very foolish mistake and decided to go cold turkey. OMG I experienced 7 days of extremely bad withdrawal symptoms the worst of which was the muscle pains and irritability. There was also watering eyes and a runny nose like a bad flu, nausea and sweating and shaking all over. These are all known symptoms if you suddenly stop using this medication but obviously, because of the drug itself, I was not thinking right when I made the decision to just stop taking it without consulting my doctor. He would have told me to come off it slowly in increments.

In retrospect I could see that the Tramadol was causing major drowsiness in me. When it was completely out of my system I realised that many of the symptoms I had started taking it for had gone - that is the nature of Fibromyalgia, I think, it changes all the time.

My muscles feel like they are being clenched all the time, especially the muscles in my upper arms, buttocks, thighs and calves. This is a feeling that rarely ever goes away except when I am in warm water at a temperature of 33 to 35 degrees or I am having a massage.

My muscles sometimes go into spasms like cramps and this is especially bad and immobolizing when the larger muscles are involved. One day I stood up but could not move for about 15 minutes due to pain in my buttocks. This has happened 3 times now. It was quite frightening the first time but now I understand what is happening, at least.

My muscles are in pain, even as I sit here on a comfortable lounge writing this. My wrists and forearms ache from typing and my legs are just in constant pain.
I also get restless leg syndrome quite often where my legs are so irritated I cannot get to sleep. The best way I can describe it is that they feel electrified.

I am explaining all this because I have just heard about a medication used in Fibromyalgia for relaxing the muscles called Cyclobenzaprine. It's brand name is Flexeril and I don't understand why it has never been recommended to me by a doctor as it seems to cover these muscle symptoms. As a matter of fact I have never been prescribed any of the muscle relaxants:

Cyclobenzaprine (Flexeril)

Methocarbamol (Robaxin)

Diazepam (Valium)

Carisoprodol (Soma)

So on first investigation Cyclobenzaprine gets a good rap:

Cyclobenzaprine has also shown effectiveness in the treatment of fibromyalgiasymptoms, with a report of 4.8 patients needing treatment for each (1) patient reporting pain reduction (but no change in fatigue or tender points). Conclusion:Cyclobenzaprine-treated patients were 3 times as likely to report overall improvement and to report moderate reductions in individual symptoms, particularly sleep.Treatment of fibromyalgia with cyclobenzaprine: A meta-analysis

On further investigation many people suffer side effects from Cyclobenzaprine which can range from headache and a tired feeling to dizziness, drowsiness, trouble concentrating, blurred vision, dry mouth or throat, altered sense of taste, nausea, upset stomach and constipation. In elderly patients it can cause confusion, delirium, and cognitive impairment according to the Duke Clinical Research Institute. (PDF)

Tuesday

I love natural treatments for my fibromyalgia because not only can they help they usually do no harm. Some people call them alternative treatments or complementary treatments for Fibro. I must say I am someone who is very sensitive to medications and that I usually suffer bad side effects so finding treatments that help relieve some of my fibromyalgia symptoms, without any bad side effects, has been a priority for me. It has taken a while to work out which of these treatments works for me and I suppose the main drawback is the cost. I look at it as an investment in me, my well-being and my health... after all if I don't look after myself who will?So here is a list of the many natural treatments I have written about. I hope you find them useful. Just click on the one you are interested in to be taken to the article.

Monday

In the past, when I first was diagnosed with Fibro, I took many different medications to try and reduce my symptoms of pain and fatigue and numbness and tingling. Neurontin and Lyrica were just 2 of the treatments that my rheumatologist prescribed at different times. I have put them together, in this post, because I now know, that they are both anticonvulsant drugs or anti-seizure drugs. Neurontin is also called gabapentin and Lyrica is also called pregabalin. Neurontin (gabapentin) was made to treat epilepsy but is now used to treat fibromyalgia and other types of chronic pain. It is used to treat neuropathic pain which I had in the form of the tingling and numbness in my fingers, hands, toes and feet. It is not possible to know whether Neurontin will help you or not before you start taking it. Apparently it helps 4 out of 10 people reduce their pain by half according to a clinical trial run on 5633 people with Fibromyalgia. There are a few side effects and I experienced one of them which was dizziness. Now dizziness may seem very slight to some people, as a side effect, but it made life very difficult, especially driving. I also experienced nausea, even when taking the tablet with food. The good news was that the tingling and numbness did stop initially, which was very exciting after living with it for many years but after 2 weeks it came back again. The suggestion was to increase the dose but this also increased the dizziness and the nausea. By this stage i had gained weight and felt that my fibro fog was more constant. In the end I chose to stop taking it because the side effects seemed to outweigh the benefits.Both Neurontin and Lyrica are antiepileptic medications and overall they are quite similar but have a few differences: absorption of Neurontin happens in the small intestines and absorption of Lyrica happens in the small intestine and in the ascending colon as well and is more quickly absorbed. Lyrica (pregabalin) is also a drug that targets nerve pain and I remember on the first night I took it having no pain and an extremely good sleep. This was exceptional as I had been in pain every day for years and also having difficulties falling asleep and staying asleep. Little did I know that the daytime drowsiness would not go away and the lack of pain only last 3 days. They were 3 days of bliss though and I remember going around the house saying "the absence of pain is bliss." Sadly the dose had to increase, the drowsiness did not subside and I started to get blurry vision all of which meant Lyrica was no longer my best friend. YOU May also be interested in these articles:Duloxetine in patients with Fibro Opoids and Fibromyalgia

In the study this was compared with people who had placebo acupuncture treatments. The good effects of these real, individualised, acupuncture treatments were still felt 1 year later and side effects were mild and
infrequent.

Nine weekly sessions of individually tailored acupuncture lessened perceived pain intensity in people with fibromyalgia... It also improved their ability to function in their day to day life and their quality of
life. Therefore the study concluded that the use of individualised
acupuncture in patients with fibromyalgia is definitely recommended.

Have you tried acupuncture to help your pain symptoms? I would love to hear about it in the comments.

Sunday

For at least some groups of 'emerging adults,' sleep problems are a
predictor of chronic pain and worsening pain severity over time, a recent study suggests.Sleep problems might be an important risk factor for increased pain, especially in young women.

This new study suggests that sleep problems are significantly
associated with chronic pain and specific types of pain problems in emerging adulthood which apparently is the distinct period between 18 and 25 years of age. "Our findings indicate the sleep problems are not only a
precursor for pain, but actually predict the persistence of chronic
pain and an increase in pain levels," say the researchers. In addition,
they conclude, "Our findings suggest that sleep problems may be an
additional target for treatment and prevention strategies in female
emerging adults with chronic pain and musculoskeletal pain."

Saturday

Innovative Med Concepts (IMC) is a biotech company with upcoming treatments for fibromyalgia and other conditions that are related to the disease.

IMC has designed a new way to suppress chronic
tissue-resident herpes virus, which may have a role in triggering fibromyalgia or
maintaining it's symptoms. The new oral medication is IMC-1 - a fixed-dose combination
using doses of famciclovir, an anti-viral, and celecoxib, a COX-2 inhibitor that also possesses unique
anti-viral activity. In previous clinical studies a significant decrease in pain was observed for patients on this combination of drugs and an improvement in fatigue levels.

IMC believe that suppressing latent herpes viruses may
significantly improve fibromyalgia related symptoms and are beginning Phase III trials with
IMC-1 in 2017.According to Dr. William Pridgen, who ran the previous clinical trial, chronic tissue-resident herpes virus may be an underlying cause of fibromyalgia. Dr. Pridgen is Board Certified in General Surgery, a Fellow of the American College of Surgeons, and for nearly two decades has conducted research into the causes of chronic pain, IBS, ME/CFS, fibromyalgia, and other chronic idiopathic disorders. Before founding IMC, Dr. Pridgen treated thousands of patients with fibromyalgia and chronic gastrointestinal issues, and was determined to gain a better scientific understanding of the sporadic, unpredictable recurrences of his patients' discomforts. His quest for answers served as the catalyst for Dr. Pridgen’s viral theory, leading to his utilization of anti-viral combinations that consistently resulted in positive outcomes for his patients.

EDITOR

FACING FIBRO

If you are facing Fibromyalgia you will find lots of information here to help you understand the science behind it, the treatments available, including alternative treatments,coping strategies and my personal journey with it.